geneva

I am curious if anyone else has experience a HEATED tingling in their arms. This just started a few months ago for me and only happens immediately when I wake up...literally within a minute or 2. I remember that at my worst, the minute I would wake in the a.m. my heart rate would soar, like it was also "waking up". The tingling is not new for me to have in my extremities, but the heated sensation is new. It starts at the top of my shoulders and goes downward; I imagine that it is warm flowing blood moving down into my arms and hands. It only lasts maybe 15 seconds and then is gone, replaced by a rush of dizziness (maybe my arms took too much blood??) and what feels like a drop in bp. Anyway, it is not painful or really a problem. I am getting used to it but was curious if anyone else has experienced. I am very well hydrated but early a.m. I need 16 to 20 ounces of fluids before I get up out of bed, so I think that it one possibility. Oh, the quirks of life with POTS!

Wow Julia! You have so much going on that it is easy to understand how overwhelmed you are feeling. I applaud you for recognizing that reconnecting with Ken is what you need to do to get through this partially difficult time. I wish I had some words of wisdom, but I don't. I can share that short term memory is not my strength either. I was just having this conversation with family last night about how I can remember numbers (household budget, telephone numbers etc) but concepts, conversations, movies, books are another story. Maybe half my brain is still working! I hope you will find some peace soon . Getting a positive answer on SSDI will help. I will keep thinking positive thoughts for you. (Angela, SSDI is social security disability insurance. Tearose, have you heard back on yours?)

Sarina, welcome to the site! It IS a warm and friendly place to come and you will find many new friends here who care about you. I know at 15 it must be so hard to have friends drop away but the truth is that we find who our best friends are during times of hardship. I am glad that you were able to get a diagnosis after such a long period of time...unfortunately, it happens all too often. Have you found medications that are helping? It is usually trial and error in the beginning but I hope something will help you feel better. I remember the horrible fatigue and am so sorry that at 15 you are experiencing it. Just remember that the more you can let your body relax and have a chance to improve/heal itself the better it will be. We all go through periods of giving in to the need to rest and other times trying not to let the illness control what we do daily. It is a difficult balance to maintain but the best advice I can give you is to listen to your body...it WILL tell you what you need. So glad to have you onboard!

Jessica, you must be so elated to have found a new doctor that has taken your condition very seriously. It is wonderful to have the thorough test and I do hope that once you deliver the baby there will be treatment that will help you improve. That would be the most wonderful news! Sorry you are still feeling bad but soon will be well into the 2nd trimester when things will improve (fingers crossed!). take good care and like others, I was glad to hear from you today.

Jersey girl, I have the exact pain you describe whenever there is a low pressure weather system approaching. We have had 4 or 5 in the last 4 weeks and each time I get pressure and then pain in my lower skull, neck and shoulders areas. I get massages regularly and they help UNLESS the pain is weather related. The only thing that helps is when the front moves through.

You have tremendous patience and your persistence is admirable! I am glad that you have an appointment and I think you will find Mayo takes good care of you during the testing etc. But do take plenty of magazines or cds to listen to in between appointments. I really hope that you are able to get some answers.

Amy, I think your should print the post where you have detailed your changes and take it with you to see your doctor and/or new endo. If you haven't had some of the endo. tests done it would seem to be very helpful to eliminate other medical conditions where symptoms are similar to ANS. With regard to the nausea I can remember that I had it 24 x 7 for months on end at the onset. Nothing I did helped and the doctors couldn't give me anything. I read somewhere that with POTS, nausea is often a sign that you are exerting beyond your capabilities. WIth a baby I am sure that you must be pushing beyond the limits of what would be ideal to let your body try to recover. I don't have any suggestions how to ease up on your level of activity or relax because I know caring for a baby is full time. It sounds like you are one to want to get answers and to do so may mean goiing to a new doctor. Hopefully you can find a good endo. in your area. Good luck and I really hope you can feel better in the near future.

Merrill, Glad you are keeping your spirits up! I just wanted to say that the hand and arm numbing used to happen to me ALL the time, particularly at night. And it is more than just your hand being "asleep". The doctor thought maybe carpal tunnel but I knew it was just probably POTS in all its weirdness. I had already had all the MRIs and nerve conduction and muscle tests. The really strange thing is that after several years of having these symptoms very frequently I don't think it has happened this year....I haven't thought about it until now. I think the autonomic firestorm is a good theory. It's also one of my favorite expressions when things start going really bad really quick. My family will ask, what the heck is happening and I'll reply...just another autonomic firestorm!!! Sleep or at least rest well til your appointment. Geneva (Emily, I have noticed that you almost always sign off because you are hungry!!!! Can it be???? So far, I think tearose may be your toughest competition for the merrill cookie award....but maybe Merrill is making an entire batch...enough for all of us!!!)

Ginnysgirl, So sorry to hear your little girl is going through so much pain with just trying to eat. This must be particularly hard for a child. Sounds like she is wise beyond her years willing to go through all the tests, including the "yukky" ones. When I read your post, I had the same thought as Gena about gluten intolerant (since gold fish have gluten). 10 months ago a nutritionist suggested I try going gluten free and I was so surprised how much better I felt. I also wanted to mention that this weekend I tried tea made from 100% ginger root. Someone on this forum (Gena??) mentioned it a few weeks ago as being good for GI problems. I really enjoyed it and plan to drink it regularly now.

Hi Mindy, I am sorry to hear that you are going through a bad time. It is certainly understandable to be scared. Plus, with doctors and POTS, it is hard to know when thaey are correct and a symptom is OK and when you should push them more aggressively because you feel it is serious. The best advice is to always follow your own instincts because no one knows your body and how it reacts better than you do. I know from my past experience that any change in meds brings on a reaction so I agree with the others that checking in with your doctor today and going over all meds, even supplements, you have added recently is a good idea. Hope you are feeling better soon.

Hi Blackwolf, I hope you were able to get some rest. I get the freezing spells without a temp. and I have found that heatable packs you put in the microwave help tremendously. Most drug stores have these available. I hope your doctor can give you something to help today.

Hi Michelle, I so agree that it is very important to have free access to all information for this illness and those who stumble on the site. I worry that some people might not pursue all that is available to them either because of lack of funds or not wanting to pay for something in advance "sight unseen". It would be heart wrenching to know that someone couldn't access information easily that might change their lives literally. Katherine, I like the idea of suggested membership but worry that it could potentially reduce those who participate. Also, from Emily's email, I would hate to know that someone's "job" would be collections....yikes! In my opinion I think DINET is great just the way it is -- free and available to all. I would hate to see it change. So, if there are others who feel the same and are in a position to help, I support donations. Perhaps when Michelle you let us know what is needed, those of us who can will respond with commitments and you can see if that covers expenses or 2005. ok, just my 2 cents worth!

Nina, I wish we all lived closer so others could help out. I have this picture of you in your neck brace awkwardly leaning over a bunch of bracelets, packing envelopes, tape, and labels!! I really hope this is not making your neck and back pain worse. take care.

I know last week many posted words of appreciation to those at DINET who provide this wonderful forum where ideas and experiences can be shared and friendships with people who understand one another are formed. Then there is the Meet others program and newsletter and I am sure more behind the scenes work. Michelle, while you are not one to ask often for funds I think we all recognize there are operating costs required to keep DINET up and running. I recall that you posted receiving donations covering 2004. What can those of us who are able do to help with 2005 operating costs...what amount is needed? Michelle, you and Nina in particular have made this a safe and wonderful place for so many to come, share ideas, and find comfort. While it is impossible to guess how many lives you have touched around the world, I am sure it is many and you should take great pride in that accomplishment. So, as 2004 comes to a close I just want to say Thank YOU for another good year!

Nina, I just had the same problem that Julia had. It is after entering the shipping information that the error message keeps coming up for additional fields even when they are all complete. You cannot complete the transaction. I couldn't anyway. the bracelets and cards look great!!

Ling, I would be willing to bet your cycle problems do indeed have something to do with POTS. At the onset of POTS my periods stopped completely and didn't resume for 14 months and then went back to normal. In the hospital the endocrinologist said I was definitely not in menopause due to lab work. I know that skipping periods would be an easier problem to deal with than what you are experiencing but I just wanted to add that I think POTS is possibly at the root of any menstrual irregularities once other things have been ruled out. The ANS is a very independent operating system and does what it wants! I hope your doctor can find something to help relieve the pain at least.

I know from my experience that I can have days where my HR is stable but I still have other POTS symptoms. As a result of all the extra energy required for Thanksgiving, for example, I have been dizzy for 7 days, vision problems, and have an even lower tolerance for standing....I have heart pain (relieved by sitting or lying down) but my HR when I check it is OK. ALso, my bp is higher than usual which I don't fully understand except maybe for the weather front that often causes bp to fluctuate. I just think that some days my ANS is worse than others. Occasionally now it "resets" itself and my bp and HR are pretty good; others days, not so. I hope you feel better soon!

Mary, it just doesn't seem fair.....I am so sorry your family is going through this difficult ordeal. Heart ache is certainly what I too am feeling for little Marissa. As hard as it is to do with all the stress you are under, do try to take care of yourself as well as MArissa. She needs you strong. We are all here for you and will wait to hear an update.

Beverly, I read your last post with concern. I certainly don't think there is criticism or disagreement with your approach with Nicole...on the contrary, there is much admiration and respect for your devotion, the hours you spend researching, and the amazing way you have found a doctor who makes house calls (who knew they still did that!). As the mom of a 25 year old, I can't imagine how incredibly hard caring for a very ill child, even one who is an adult, must be especially when you too have your own health challenges. I think you are doing an admirable job and hope you appreciate that as much as I am sure Nicole does. Those of us here can only offer suggestions of what might be helpful or what has helped us. But the bottom line is that Nicole knows what she can and can't do at this point. I know when I was at Mayo I declined some of the tests because my health was so fragile (extremely uncontrolled BP for example) and I felt the reaction and the stress of the test was too much for me. The dr. of course tried to make me feel bad but in the end I knew I was right to postpone. Since Nicole (and you) have lived with this condition for 8 years I think she knows what she is capable of handling. One step at a step....and she has made a big step moving and settling into your home and I hope that there are more small steps forward. I hope very much that you are remembering to do the things that are important to you to maintain your health Beverly. I can see how easy it would be to lose yourself also in this illness but please don't let that happen.

Merrill, this is wonderful news and I am so excited for you and your husband! HAPPY BIRTHDAY as well.

Emily, FANTASTIC! I am so proud for you that you set out to go to your reunion and not only did you go but you looked great and had a good time!! Doesn't it give you a feeling that you can still have control over your life? I am really very happy for you and so glad you shared with us. I also get the full body shakes from time to time and for me, it is usually when I have had to much overstimulation. A quiet rest is what works for me. I am in a full recovery mode from 32 of my husbands relatives at our house last Thursday. My head is spinning! Rest well. geneva

I can't take hot showers at all! I really miss that too. Very blue, (off topic) I haven't been on in a while so I know I am behind on reading messages but last I remember you were talking about how to get tested for POTS -- TTT etc. Have you had any luck finding a specialist in your area? geneva

I always know if my bp is too low at night because like others, tachycardia will wake me up. Over time I learned not to become alarmed and when my bp is lower than norm I find I sleep really well. I joke with my husband that if I am in my "coma sleep" do NOT wake me. It is when I get my most restful sleep and I think it is my body forcing me to rest.

Katherine, I have an only child because of complications I had with delivery and post partum. I had pregnancy induced hypertension and toxemia. Baby was fine but I was not...a lot of weird things doctors couldn't explain 25 years ago. I remember when I spoke with my doctor about a 2nd child he had me undergo a brain scan because they weren't sure I could tolerate another pregnancy. He told me that I had a hidden tendency to hypertension and it would flare again later in my life. I never had any trouble with BP however until 20 years later and the onset of pots.

Hi Blackwolf I hope that you find what you need today be it closure or peace of mind. geneva